HCM-ers: Introduce yourself or just say hi

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect – a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

@margie11

Hi, I’m interested in joining this community because my father had a triple bypass with a septal myectomy 5 years ago at the age of 78. His 9 and a half hour surgery was performed at Columbia Presbyterian, where he had an 8 day stay. A year later he underwent an Abdominal Aortic Anyurism Repair, also at Columbia, for a AAA that was discovered a few years prior to his HCM surgery (it had grown to a dangerous size). He’s now 83 and in very good health, doing all things he did even 20 years ago. He’s always been very active, all his life, follows the Mediterranean diet (he’s from Italy). He does have a sweet tooth but never over indulges, just a little bit is fine, and he scrapes the frosting off of birthday cakes “It’s too much” (the doctors got a chuckle when they heard that). Unfortunately his brother and a few other male relatives who were also active and in good shape passed away from heart disease, and we often wonder if perhaps they also had HCM. It’s so important to get treatment from doctors and hospitals who have great experience with HCM, like those from Mayo Clinic, etc even if you have to travel. If you can’t travel, then maybe you can ask your doctor to confer with a doctor from a major hospital? I wish everyone here the best of health and success in their HCM journey.

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I have been involved in HCM for the past 10 years and those folks I have met who did not have theirs done at a high volume center have a higher incidence of a second surgery or they never got the relief they sought. Your father sounds like a great guy – glad he doing well.

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@eelnaloblob18

Hi, I’m Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad’s side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven’t received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I’ve heard that Cleveland Clinic also does HOCM myectomies, but they don’t accept my insurance as in-network either. I’m still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

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Hi Janet,
I’m on this and hope to answers for you soon about Florida.

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@eelnaloblob18

Hi, I’m Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad’s side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven’t received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I’ve heard that Cleveland Clinic also does HOCM myectomies, but they don’t accept my insurance as in-network either. I’m still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

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Thank you for the info. Do you know the surgeon/s at Mayo in Minnesota who perform the most myectomies? I found one surgeon at Cleveland Clinic who has done 2000 +, but I haven’t found this info yet from Mayo.

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@eelnaloblob18

Hi, I’m Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad’s side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven’t received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I’ve heard that Cleveland Clinic also does HOCM myectomies, but they don’t accept my insurance as in-network either. I’m still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

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Thank you. I did receive a reply that convinced me that going to Mayo in Minnesota would be a better outcome due to higher volume of patients undergoing myectomies there.

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@margie11

Hi, I’m interested in joining this community because my father had a triple bypass with a septal myectomy 5 years ago at the age of 78. His 9 and a half hour surgery was performed at Columbia Presbyterian, where he had an 8 day stay. A year later he underwent an Abdominal Aortic Anyurism Repair, also at Columbia, for a AAA that was discovered a few years prior to his HCM surgery (it had grown to a dangerous size). He’s now 83 and in very good health, doing all things he did even 20 years ago. He’s always been very active, all his life, follows the Mediterranean diet (he’s from Italy). He does have a sweet tooth but never over indulges, just a little bit is fine, and he scrapes the frosting off of birthday cakes “It’s too much” (the doctors got a chuckle when they heard that). Unfortunately his brother and a few other male relatives who were also active and in good shape passed away from heart disease, and we often wonder if perhaps they also had HCM. It’s so important to get treatment from doctors and hospitals who have great experience with HCM, like those from Mayo Clinic, etc even if you have to travel. If you can’t travel, then maybe you can ask your doctor to confer with a doctor from a major hospital? I wish everyone here the best of health and success in their HCM journey.

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Thanks Colleen, I’ll watch it soon! You know our family had never heard of HCM before my father was diagnosed, so it was all quite scary to us. It’s one thing to hear advice from a doctor, but quite another thing to hear about first hand experiences from patients. What a wonderful thing this forum is, thanks for creating it.

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@colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I’m tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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HI Wandy and welcome. Have you been able to travel to Mayo Clinic to be evaluated?

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@margie11

Hi, I’m interested in joining this community because my father had a triple bypass with a septal myectomy 5 years ago at the age of 78. His 9 and a half hour surgery was performed at Columbia Presbyterian, where he had an 8 day stay. A year later he underwent an Abdominal Aortic Anyurism Repair, also at Columbia, for a AAA that was discovered a few years prior to his HCM surgery (it had grown to a dangerous size). He’s now 83 and in very good health, doing all things he did even 20 years ago. He’s always been very active, all his life, follows the Mediterranean diet (he’s from Italy). He does have a sweet tooth but never over indulges, just a little bit is fine, and he scrapes the frosting off of birthday cakes “It’s too much” (the doctors got a chuckle when they heard that). Unfortunately his brother and a few other male relatives who were also active and in good shape passed away from heart disease, and we often wonder if perhaps they also had HCM. It’s so important to get treatment from doctors and hospitals who have great experience with HCM, like those from Mayo Clinic, etc even if you have to travel. If you can’t travel, then maybe you can ask your doctor to confer with a doctor from a major hospital? I wish everyone here the best of health and success in their HCM journey.

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Thanks mbcube, we’re grateful he’s doing well. I look forward to your advice on HCM, with your experience it sounds like you’re going to be a good resource here!

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@eelnaloblob18

Hi, I’m Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad’s side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven’t received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I’ve heard that Cleveland Clinic also does HOCM myectomies, but they don’t accept my insurance as in-network either. I’m still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

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I’m glad to hear you got a reply. Yes, the largest number of myectomies are done in Rochester. You can read more testimonials from Mayo patients in this discussion, and how the travel was not the barrier to excellent care http://mayocl.in/2ef1nMc

You may appreciate seeing these 2 webinars with HCM experts from Mayo Clinic
– Steve R. Ommen, M.D., and Hartzell V. Schaff, M.D., talk about Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy http://mayocl.in/2dmWhdI
– Dr. Dearani Dr. Joseph Dearani, cardiac surgeon talks about pediatric congenital heart disorders http://mayocl.in/2dLzuK9

Hope this helps.

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Hi, I just want to say how much I appreciated the webinar on apical cardiomyopathy. I am in UK so am not able to access the facilities you have in the US but still very much appreciate being able to “listen in” on the webinars you have.
Knowledge reduces fear. Thank you

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@eelnaloblob18

Hi, I’m Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad’s side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven’t received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I’ve heard that Cleveland Clinic also does HOCM myectomies, but they don’t accept my insurance as in-network either. I’m still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

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Hello @eelnaloblob18 , I work with the heart practice for all three Mayo sites. Did you get all the information you need? If not, I will follow up with our cardiac surgeons. Thank you for your insightful questions. It is good that you are being proactive in doing research about outcomes.

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@eelnaloblob18

Hi, I’m Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad’s side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven’t received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I’ve heard that Cleveland Clinic also does HOCM myectomies, but they don’t accept my insurance as in-network either. I’m still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

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@eelnaloblob18, depending on where your thickened muscle is (i.e. septal, mid-ventricle, apical), the myectomy you need might require different techniques. For instance, I have apical HCM with mid-ventricular obstruction and apical aneurysm. The procedure I underwent was Apical Myectomy, which took a trans-apical approach. This trans-apical myectomy is different from the traditional septal myectomy. Your doctors should determine what kind of myectomy you need. I believe a few COEs can all do septal myectomy quite well. But if ultimately what you need is an Apical Myectomy, you have to go to Mayo Clinic in Rochester. The technique for this procedure was invented by Dr. Hartzell Schaff at Mayo Clinic. I do not believe other centers can do trans-apical myectomy as well as Mayo Clinc can. Something for you to consider. Hope everything works out well for you.

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@1949

Hi, I’m Tillie from California. Thank you for adding me. I found out in 2011 that my brother had HOCM. I was asymptomatic at that time and was told by a local cardiologist that I didn’t have it and never would. I then became symptomatic two years ago and was lucky to find a knowledgeable HCM cardiologist. In June of this year, my cardiologist recommended that it was time for a myectomy. I am scheduled to have one on December 30 at the Rochester’s Mayo.

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Hi Tillie (@1949),
How are you doing? How did your surgery go?

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I am new to this site. I have a myectomy scheduled for March 6th and am coming from Billings, MT. My main concern is the recovery time before I can fly home. I know that I have to remain flexible which is hard for a planner like me. I am taking off of work starting February 28th to fly to Rochester for consults before surgery.

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@rushtonrocks

I am new to this site. I have a myectomy scheduled for March 6th and am coming from Billings, MT. My main concern is the recovery time before I can fly home. I know that I have to remain flexible which is hard for a planner like me. I am taking off of work starting February 28th to fly to Rochester for consults before surgery.

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Welcome @rushtonrocks!
Some of questions have been answered in these discussions. Check them out.
– What is the recovery like following septal myectomy? http://mayocl.in/2fdCxHz
– Septum myectomy scheduled next week Jan 20th http://mayocl.in/2lmVv2k
– Just Diagnosed with HCM http://mayocl.in/2kPfKb8

As you get to know the other members, you might have specific questions for specific members. Simply include their @username in your reply and they will get an email notification about your question. We look forward to getting to know you as you prepare for your visit to Mayo and surgery.

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@rushtonrocks

I am new to this site. I have a myectomy scheduled for March 6th and am coming from Billings, MT. My main concern is the recovery time before I can fly home. I know that I have to remain flexible which is hard for a planner like me. I am taking off of work starting February 28th to fly to Rochester for consults before surgery.

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Hi @rushtonrocks

I cannot advise you on your particular case and recommend that you ask your surgeon about that. In my experience, I had a septal myetcomy and double bypass on a Tuesday and was released from the hospital on a Saturday. This was in December of 2015 and today, I feel great. The following week at home was tough and thankfully my wife helped me through it.

I currently work in Rochester in the Public Affairs department at Mayo and if you would ever like to talk about my situation and recovery and if our schedules could work, I’d be glad to say hello to you in person while you are visiting. My experience was very positive, but there were some challenges. If you want to connect, just send me a message with your contact information and I’ll follow up. Thanks Ron

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